To Tell or Not to Tell: Repressing Your Truth

When you live with MS, the question inevitably comes up whether or not to tell your loved ones about your diagnosis. Do you tell your employer or withhold it for fear of their reaction? If you’re single and dating, do you tell your companion? As a parent do you tell your child?

It’s very personal

There are no right or wrong answers to this question. It’s very personal, filled with such raw emotion that you need to do what’s best only for you.

The broader question is: how can we be completely ourselves if we’re keeping things from others? Do we cling to our diagnosis, doling it out only on an as-needed basis? This takes up energy, and that energy adds stress and anxiety to a disease that begs for none.

In general, keeping things to ourselves can cause serious consequences for our health. It can affect our MS.

You can follow a perfect diet. Exercise every day. Drink plenty of water and practice stress-reducing activities such as yoga or t’ai chi.

Your body knows

But the body is brilliant. It speaks to us every day. And it knows when something is awry.

For example, let’s say you’re afraid to tell your friends that you have MS. You’re afraid of their reactions, that they’ll start treating you differently or distance themselves. I could say the typical platitude that if they behave this way they’re not worthy of your friendship. But let’s be honest that it hurts to lose friends. So instead of telling them about your MS you tell them nothing. You do your best to keep up with the crowd and then, perhaps, one day your leg misbehaves and you fall. You laugh it off as not having enough sleep or being clumsy. Everyone laughs.

You know the truth

But you know the truth. You’re now at the crossroads of whether to tell or not.

As I said before, it’s a personal decision, and only you know what’s best for you. I’d never preach. All I want you to do is stop, think, evaluate, and conclude.

Stop: Schedule time to be by yourself. Alone time. A walk, time sitting on a park bench, going to a cafe for a cup of coffee or sitting in a comfortable spot at home. Schedule some well-deserved ME time.

Evaluate: Consider the pros and cons of expressing your truths. What is the worst that can happen? Will the worst be as bad as you think (usually it’s not)? How can you verbalize your feelings to get your point across? Practice your speech as you would a presentation.

Conclude: Make an informed decision whether to reveal your diagnosis. Taking the time to evaluate the situation is far better than keeping it bottled up without thinking about it. If you decide to tell your truths go ahead! Good luck and let us know how it worked out. We’d love to hear about it.

Authenticity

Before I go I want to share with you something I recently read in an article by Dr. Lissa Rankin who speaks about authenticity. She wrote about the following interesting study on the way HIV-positive disease progressed based on whether someone told others about their disease:

“Steve Cole and his colleagues at UCLA investigated HIV-positive gay men to determine whether how “out” vs. “closeted” they were with their homosexuality affected disease progression. Study participants were asked to rate themselves as “definitely in the closet,” “in the closet most the time,” “half in and half out,” “out most of the time,” or “completely out of the closet.” Researchers then followed the course of their disease.

What did they find?

Bingo. On all counts, HIV infection advanced more quickly in direct proportion to how out “of the closet” the patients were. The more they lived in alignment with their truth, the healthier they were. And the results weren’t subtle. Those that were mostly or all the way in the closet hit critically low CD4 counts 40% faster than those who were mostly or all the way out, with a 21% reduction in time to death.

Other data suggests that this isn’t just true for AIDS. Concealing your identity – whether you’re hiding your unhappiness in your marriage, your dissatisfaction at work, your frustration with how creatively thwarted you feel while raising three kids, or your sexual frustration in a partnership where you’re not getting any – can compromise your ability to heal.

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Comments

My husband of 30 years left me not long after my diagnosis. After pulling my life back together I decided I might think about dating. I ran across this question. Do I tell? Do I not? Where do I meet men? I hadn’t dated in over 30 years!

I eventually started dating. I was quite surprised at the reaction I got from most of the men. My MS really wasn’t an issue with them. This surprised me. I had one man tell me, “Julie, at our age, we just hope you aren’t crazy”. LOL

I did have one man tell me he thought I should stay home and take care of myself, not date. OK, byebye. I figured that if they had a problem with it, they better tell me up front and not waste my time. Also, if I started dating someone and things got serious, how would I explain my silence on the subject? Would they feel I was being deceitful?

This was just me. It was how I came to terms with being upfront. It worked for me. MS doesn’t define me but it is a part of my life. I can’t hide or deny it. I think that telling the man up front made them more comfortable with me. Maybe a bit surprised when they met me and yes, I walk with a limp and my left arm and leg are weak but when you are our age, who doesn’t have physical problems?

So, to tell or not? Only you can decide for yourself. You have to know what will work for you

Exactly true, Julie. It’s so personal that we all must decide for ourselves what’s best for us. I’m so glad you shared your powerful story with us, and I wish you the best of luck in everything going forward.